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Guidance for the National Healthcare Disparities Elaine K. Swift, Editor Committee on Guidance for Designing A National Healthcare Disparities Report INSTITUTE OF MEDICINE OF THE NATIONAl ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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THE NATIONAL ACADEMIES PRESS 500 FIFTH STREET, N.W. - Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. Support for this project was provided by Agency for Healthcare Research and Quality. The views presented in this report are those of the Institute of Medicine Committee on Guidance for Designing a National Healthcare Disparities Report, and are not necessarily those of the funding agencies. International Standard Book Number 0-309-08519-5 Additional copies of this report are available for sale Dom the National Academies Press, 500 Fifth Street, NW, Lockbox 285, Washington, DC 20055; call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http:// www.nap.edu. For more information about the Institute of Medicine, visit the TOM home page at: www.iom.edu. Copynght 2002 by the National Academy of Sciences. All rights reserved. Pnnted in the United States of America. The serpent has been a symbol of Tong life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Ionic is cot ends we least apply. Wiping is not enough; we angst do. ~ Goethe .. ..... . ~ ... .... ...... . . . ...... INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Shaping the Future for Health

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THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, end Meditine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Bruce M. Alberts is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy's purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Bruce M. Alberts and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council www.national-academies.org

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COMMITTEE ON GUIDANCE FOR DESIGNING A NATIONAL HEALTHCARE DISPARITIES REPORT Sheldon Greenfield (Chair9, Director, The Primary Care Outcomes Research Institute, Tufts University School of Medicine Lu Ann Aday, Professor, University of Texas School of Public Health John Z. Ayanian, Associate Professor of Medicine and Health Care Policy, Department of Health Care Policy, Harvard Medical School James Bernstein, Assistant Secretary for Health, North Carolina Department of Health and Human Services Joseph Betancourt, Program Director, Multicultural Affairs Office, Massachusetts General Hospital E. Richard Brown, Director, Center for Health Policy Research, University of California-Los Angeles Kevin Fiscella, Associate Professor, Department of Family Medicine, University of Rochester School of Medicine Marsha Lillie-Blanton, Vice President, Health Policy, Kaiser Family Foundation Michael Marmot, Director, International Centre for Health and Society, Department of Epidemiology and Public Health, University College, London Doriane C. Miller, Program Vice President, Robert Wood Johnson Foundation Eileen H. Peterson, Vice President, UnitedHealth Group, Center for Health Care Policy and Evaluation Neil R. Powe, Director, Welch Center for Prevention, Epidemiology and Clinical Research, The Johns Hopkins Medical institutions David T. Takeuchi, Professor, School of Social Work, University of Washington v

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Commissioned Paper Authors Marian E. Gornick, Consultant, Health Services Research Thomas A. LaVeist, Associate Professor of Health and Public Policy, Department of Health Policy and Management, Bloomberg School of Public Health, The Johns Hopkins University Nicole Lurie, Paul O'Neill Alcoa Professor in Policy Analysis, RAND Corporation Thomas C. Ricketts OT, Professor, Department of Health Policy and Administration, School of Public Health, University of North Carolina-Chapel Hill V1

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Study Staff Elaine K. Swift, Study Director Janet M. Corrigan, Director, Board of Health Care Services Hope R. Hare, Senior Project Assistant Auxiliary Staff Teresa Redd, Financial Analyst Copy Editor . . V11

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REVIEWERS The report was reviewed by individuals chosen for their diverse perspectives and technical expertise in accordance with procedures approved by the National Research Council's Report Review Committee. The purpose of this independent review is to provide candid and critical comments to assist the authors and the Institute of Medicine in making the published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. The committee wishes to thank the following individuals for their reviews of this report: H. Jack Geiger, The City University of New York Christopher Gibbons, The Johns Hopkins University Margarita P. Hurtado, American Institutes of Research Kala Ladenheim, National Conference of State Legislatures Elaine Larson, Columbia University Ruth T. Perot, Summit Health Institute for Research and Education David Satcher, The Henry M. Kaiser Family Foundation Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the guidance offered by the committee nor did they see the final draft of the report before its release. Responsibility of the final content of this report rests entirely with the authoring committee and institution. The review of this report was overseen by Shoshanna Sofaer, Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College, who was responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. . . . vail

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ACKNOWLEDGMENTS Many individuals and organizations contributed to the work of the committee. The Agency for Healthcare Research and Quality (AHRQ) provided financial support and technical assistance. In particular, we would like to thank Carolyn CIancy, Acting Director, AHRQ; Helen Burstin, Director, Center for Primary Care Research; and Thomas W. Reilly, former director, National Quality Report. We would also like to thank the authors of commissioned papers: Marian E. Gornick, Thomas A. LaVeist, Nicole Lurie, and Thomas C. Ricketts, III. We acknowledge the experts who provided helpful background at the committee's organizational meeting held in Manual, 2002. They include Claudette Bennett, Chief, Racial Statistics Branch, U.S. Census Bureau; Adrienne Stith Butler, Program Officer, the Institute of Medicine's Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care; Diane Makuc, Director, Division of Health and Utilization Analysis, National Center for Health Statistics; Brian D. Smedley, Senior Program Officer and Study Director, the Institute of Medicine's Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care; Shelly Ver Ploeg, Senior Program Officer and Study Director, the National Research CounciT's Panel on DHHS Collection of Race and Ethnicity Data; and Helen W. Wu, Minority Health Project Director, National Quality Forum. Many people contributed to the committee's workshop on the National Healthcare Disparities Report (NHDR) held in March, 2002. They include: Dennis P. AndruTis, Research Professor, State University of New York Health Sciences Center; Roger I. Bulger, President and Chief Executive Officer, Association of Academic Health Centers; I. Emilio Carrillo, Chief Executive Officer, New York Presbyterian Community Health Plan; Kathryn Coltin, Director, External Quality and Data Initiatives, Harvard Pilgrim Health Care; Merle Cunningham, Medical Director, Sunset Park Family Health Center Network of the Lutheran Medical Center, Brooklyn, New York; Gem P. Daus, Legislative and Governmental Affairs Coordinator, Asian and Pacific Islander American Health Forum; Arthur Elster, Director, 1X

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Medicine and Public Health, American Medical Association; Vanessa Northington Gamble, Health Policy and Medical Education Consultant; JuTianna S. Gonen, Director, Center for Prevention and Health Services, Washington Business Group on Health; Gina Gregory-Burns, Module Chief, Centro de Salud, Kaiser Permanente of San Francisco; Andrew I. Imparato, President and Chief Executive Officer, American Association of People with Disabilities; Keith Mueller, Director, Nebraska Center for Rural Health Research, University of Nebraska; David Nerenz, Director, Institute for Health Care Studies, Michigan State University; Darlene Nipper, Director, Multicultural and International Outreach Center, National Alliance for the Mentally Ill; Rea Panares, Manager, Center for Prevention and Health Services, Washington Business Group on Health; Lucille Norville Perez, President, National Medical Association; Jeanette South-PauT (representing the American Association of Family Physicians), Chair, Department of Family Medicine, University of Pittsburgh School of Medicine; Ulder I. TilIman (representing the Association of State and Territorial Health Officials), Director, Delaware Health and Social Services Division of Public Health; AdewaTe Troutman, Director of Public Health Services, Fulton County Health Nepal lenient, Georgia (representing the National Association of City and County Health Officers); and Steven WiThide, Executive Director, National Rural Health Association. x

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PREFACE Health care disparities deserve our attention. This nation believes that health care should not differ by race, ethnicity, socioeconomic status, or geographic location. And yet, ample evidence indicates that disparities exist. The existence of health care disparities is common knowledge to some. However, as indicated by the headlines on the release of the Institute of Medicine report, Unequal Treatment (TOM, 2002), it is news to many. This is where the National Healthcare Disparities Report (NHDR), to be issued by the Agency for Healthcare Research and Quality (AHRQj, could make a major difference. As a new annual report to Congress on racial, ethnic, socioeconomic, and geographic disparities, it has the potential to educate both policy makers and the larger public on the extent of health care disparities and to focus their attention on areas where action is most needed. In other words, the NHDR could help to set the agenda for a major health care issue that too few are either familiar with or know how to effectively address. To help the NHDR fulfill its potential, AHRQ commissioned the IOM to provide guidance on technical aspects of the report, including the measurement of disparities in health care access, quality, and service utilization; the measurement of socioeconomic status and geographic disparities; and the use of subnational datasets to support disparity measurement. The TOM named the Committee for Guidance in Designing a National Health Care Disparities Report to carry out this work. Committee members contributed their considerable expertise in community health; health care delivery systems; health care disparity measurement and prevention; health care access; service utilization; quality measurement; and health care datasets. The committee engaged several consultants to provide further background on the areas it was charged with studying. Commissioned papers by Marian E. Gornick (on the measurement of socioeconomic status), Thomas A. LaVeist (on the measurement of disparities in service utilization and quality), Nicole Lurie (on the measurement of disparities in access), and Thomas C. Ricketts, ITT (on the X1

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measurement of geographic disparities), are included in this publication. The committee met twice. In January 2002, it held a meeting to gather background information from experts from AH:RQ, the U.S. Bureau of the Census, the National Center for Health Statistics (NCHS), the National Quality Forum (NQF), and the IOM. Experts from AHRQ briefed committee members on the agency's work on health care disparities and the conceptual framework that will be used by both the NHDR and another new and related annual report to Congress, the National Healthcare Quality Report (NHQR). Members were also briefed on Census 2000 findings on race and ethnicity as well as on a recent government report from NCHS on geographic health care disparities. Lastly, the committee learned about other studies on disparities by the NQF and the IOM. During this meeting, it also met in closed and open session to plan its work and to hold preliminary discussions on its charge. In March 2002, it held another meeting to hear presentations from the consultants and testimony from invited academics, clinicians, advocates, and other experts in health care disparities. Drawn from across the country, these experts offered their perspectives on what the content of the report should be, including the areas of disparities that should be measured; the need for accurate data; and the different ways in which policy makers at the federal, state, and local levels might find the report useful. The committee also met in closed session to reach agreement on the response to its charge. Following the March meeting, committee members continued to communicate by telephone and electronic mail. The guidance that the committee has issued is highlighted in the text of the Executive Summary and the Committee Report and is based on consensual agreement. This guidance addresses issues that include the challenges of adequately measuring racial and ethnic health care disparities; the need for an AHRQ-sponsored research initiative on the relationship between socioeconomic status and health care; and the primacy of disparities in health care access. The committee's guidance also focuses on the importance of including measures of high and low utilization of certain health care services, of presenting data on . . X11

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disparities at the state level and along the rural-urban continuum, and of standardizing core elements of sutnational datasets. It also addresses AHRQ's need for adequate resources to carry out technical tasks for the report. The committee looks forward to the publication of the first and subsequent editions of the NHDR. By attracting attention and raising awareness, it could help to set the standard for other health care reports. Even more importantly, by providing authoritative information on areas ripe for action, it could play a central role in speeding the elimination of health care dispanties and making good the promise of genuine health care equity. Sheldon Greenfield, Chair Reference mist TOM. 2002. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. B. Smedley, A. Stith, and A. Nelson, eds. Washington DC: National Academy Press. . . . x~

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Table of Contents EXECUTIVE SUMMARY 1 1 COMMITTEE REPORT 10 1-1. Measurement of Socioeconomic Status in Disparities Research 13 1-2. Measurement of Disparities in Access to and within the Health Care System.............................................................. ................... 19 1-3. Measurement of Disparities in Health Care Services and Quality ...22 1-4. Measurement of Geographic Disparities in Health Care 23 1-5. Subnational Datasets 26 1-6. General Issues 31 1-7. Conclusion 35 2 MEASURING THE EFFECTS OF SOCIOECONOMIC STATUS ON HEALTH CARE 45 2-1. Studying the Effects of Socioeconomic Status on Health .............. 2-2. Review of Methods Used in Studying the Effects of ..46 , ~ Socioeconomic Status on Health 47 2-3. Review of Methods Used in Studying Disparities in Health Care 55 2-4. Methodological Issues in Studies of Health Care Disparities 67 2-5. Conclusion 68 MEASURING DISPARITIES IN HEALTH CARE QUALITY AND SERVICE UTILIZATION 75 3-1. Race, Ethnicity, and Differences In Health Care 76 3-2. Creating a National Healthcare Disparities Report 85 3-3. Conclusion 91 4 MEASURING DISPARITIES In ACCESS TO CARE ........................ 99 4-1. Setting the Context 100 4-2. Evolving Conceptual Frameworks of Access to Care 102 4-3. Access to Care and the Quality Framework 107 4-4. Challenges to Examining Disnarities in Access .... 113 4-5. Principles Guiding Measurement of Access in the National Healthcare Disparities Report.......... 4-6. Core Measures................................... 4-7. Suggestions....................................... 4-8. Choosing among Potential Measures ........ 4-9. Conclusion................................................. 121 122 127 .139 .142 GEOGRAPHY AND DISPARITIES IN HEALTH CARE 149 5-1. Geography.. XIV 149

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5-2. Interstate Geography.... 5-3. Intrastate Geography.... 5-4. Technical Issues ..................................................................... 5-5. Conclusion........................ ........ 157 ........ 169 ...... 172 APPENDIX I WORKSHOP AGENDA 181 APPENDIX II PUBLIC TESTIMONY APPENDIX III COMMITTEE BIOGRAPHIES Tables and Figures List of Tables ..... 185 ..189 TABLE ES 1 Guidance for the National Healthcare Disparities Report............ TABLE 1-1 Possible Subnational Datasets to Support the National Healthcare Disparities Report (NHDR)........................... ..27 TABLE 3-1 Areas of Health Care with the Greatest Disparities in Services and Quality (Selected Studies) 82 TABLE 3-2 Hyperdisparities among Medicare Enrollees Age 65 and Over .84 TABLE 3-3 Assessment of Measures for Health Care Disparities 86 ..... 89 TABLE 3-4 Simulated Data TABLE 4-1 Example of Access-related Quality Measures 107 TABLE 4-2 Staying Healthy 136 TABLE 4-3 Getting Better 137 TABLE 4-4 Living with Illness or Disability 138 TABLE 5-1 United States Political and Statistical Jurisdictions 166 TABLE II-1 Expert Testimony on the National Healthcare Disparities ~ - fort List Of Figures ...186 FIGURE 1-1 Framework for the National Healthcare Quality Report and the National Healthcare Disparities Report 12 FIGURE 4-1 Relationship between Population and Personal Delivery Systems............................................................................. FIGURE 4-2 Relationship among Access to Care, Community, and Health Care Quality 114 FIGURE 5- 1 Variations among States in Life Years Lost and Per Capita Spending for Health 158 xv

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